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I have a new favorite dislike. My mother is starting the day saying she thinks she needs to go to the hospital. Immediately I go into high alert and dread. Then it turns out to be something age related that no hospital in the world can fix. I come up with a home fix to make it better. Like today she said she needed to go to the hospital because her leg hurt all night. Major adrenaline rush here. So I asked to see her leg. She said it was really just her heel that was hurting. I checked it and saw no problem beyond not having any fat pad to cushion it anymore. So I got a pillow for her to put under her heel when she sat down. Problem solved with no ER trip.

I told my mother this morning that I knew when she would die. It would be a week after I did. She didn't grasp what I meant, but the woman is killing me with her daily "emergencies." I wish I could help her be 40 again, but I can't.

What is so strange is that I spend the whole day sounding positive and upbeat, and she talks back like a heavy wet blanket. I don't know how we tolerate this. It absolutely sucks all the joy out of life. I don't understand why she wants badly to live, feeling as bad as she says she does. She doesn't understand that at 91 her body and mind are reaching the end.
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Reply to JessieBelle
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Jessie belle. You have the most positive thoughts I can send you
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Reply to Erinm60
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The loneliness. No one that's not the caregiver really understands the life we have, nor want/can really help.

The frustration and sadness of knowing that no matter how much I do, I'll never be able to really, really make my loved one be better.

The renunciation to having my own life.
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Reply to Rosses003
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Amen Rosses003
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Reply to Erinm60
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When new behaviors surface, sometimes it is so hard to identify it throws me for a loop.

Newer is that we buy something (liquid dish detergent), he puts it away, (hides just behind the frame inside the undersink cabinet) and asking where he put it, he answers:
"We don't have any". He is sure we don't have any.

After 4-5 times, this is becoming a theme. It even scares me that his brain is not working, when I take him through the thoughts to remember that we do have it.

This could be stress?
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Reply to Sendhelp
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This is my dementia mommy's new thing....everyday the coffee is in the same place but each day she hides the filters. Today they were with pots and pans.😄
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Reply to BootShopGirl
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JessieBelle, Luv your sense of humor, got a laugh out of me!

Rosses003, Yes at times I feel lonely, my days off are to rest, but I actually feel better at my low $$ p.t. job, less lonely I guess.

Stay strong caregivers!

Blessings 🌸
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Reply to Blessings4Ever
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Knowing that I have seven other siblings and some do absolutely nothing to help and others feel sorry for me because she calls for me constantly.
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Reply to Elizabeth1114
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Hardest part for me is envisioning my life without mom. I don't mean being sad my mom is gone but the wanting my life back. I feel so quilty because my mom is really easy to care for. It is the fact she is in my dining room and I hear her conversations (which are turning into half truths). The lack of real privacy. When I ask her about using part of her money to put her a bedroom on she acts like I am robbing her. I would like to feel better about her being here instead of my resentment. I just dislike who I've become when I'm around her. Everyone just loves my mom. The dementia has taken my mom from me and others can't see it because she has her notes when she talks on the phone. She is Miss Chatty Kathy. I come downstairs and she turns off her tv and sits mute in her chair. I feel like I am her jailor instead of her daughter. Fortunetely, she adores my husband and he is great with her. That's enough griping. Thank you for listening to my selfish complaints.
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Reply to Patticake2
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Patticake2,
I laughed when I read your post! You have just described my own mother to a T. I am glad I'm not alone hahaha! And yes I feel the same way too....We love them but I dream of a really BIG vacation.
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Reply to BootShopGirl
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...not knowing who I am anymore....what my life is. It has been years since I have been able to focus on myself and my life, I don't really have one any more. The fear of starting over and rebuilding when I finally have the freedom to do so and not knowing where to begin.
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Reply to TryingToCopeToo
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Part of the life cycle is that people return to a more infantile state: balding, toothless, incontinent, helpless, demanding, afraid of the dark, and "it's all about me." This is true even if the person does not have dementia.

So, when I hear people say "I want my old parent back" - what they really want is a return to when that parent was in his/her functional peak, such as maybe around age 50.

I know of no person in their 90s who is same, in any way, as they were in their 50s. Advertising has done us a great disservice in that regard, making us believe that if we only take our vitamins and exercise daily, that we can stave off the ravages of aging with nary more than a few wrinkles and gray hairs.
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Reply to dragonflower
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Sleep deprivation and her lack of cooperation.
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Reply to Catann
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Today it's jealousy of friends of mine who are FREE, b/c they have siblings or other resources to take care of their parents. Just about snapped at a friend who was posting lovely photos of her folks, who have been married 60 years... in another country, and she doesn't have to lift a finger to do anything to help. She has literally NO IDEA how lucky she is.

I really am hoping to avoid destroying friendships going forward, but I have at least two or three of these friends who indulge in this behavior a lot. I keep typing and then deleting "must be nice" on their posts without hitting Submit...
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Reply to Hellebore7
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All of the above. Miss my life, feel like moms jailer, hearing admiration doesn't help, siblings not helping or even calling her anymore since I'm taking care of EVERYTHING, want my mom back-I'll settle for the 75 yr old version. Late 80's are dreadful & I'm not looking forward to early 90's.
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Reply to Momshelp
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In my circumstance, my mother was/is verbally abusive - she was asked to leave 2 facilities. The most worst part of care giving for me is not knowing if its dementia or her.

My bday just passed. Last year, she refused to say H-Bday and insinuated I was not wanted. It broke my heart. I am not interested mentioning my bday with her ever again. My eldest didn't know this and mentioned my bday. She said Oh H-Bday. I nodded - it meant nothing to me so I left the room.

Her physical status is transitioning and she is going under hospice. I appreciate the resources being sole caretaker. I just wish I could discern if its dementia or her.
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Reply to KicksandGiggles
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These are such honest answers. And I'm so grateful for the space here - and recommend it to EVERYONE who is going through being a primary caregiver. It's funny, I've been very VERY honest on FB about the caregiving load - and I can tell my followers are sick of hearing about it - LOL - UNLESS they're dealing with it too. So many, "Jesus, we're so sorry (please talk about something else)" comments whenever things get real .... The most recent example - my dad fractured his hip on Monday - when Hurricane Irma was rolling into Atlanta, where I live. Off to the ER with us (with a photo on FB), and to be so honest, by the end of the afternoon, I was SO happy to be able to say, after he was admitted - gotta run, gotta get home before I'm swept away in the storm. Happy. To. Be. Free. But then, of course, that night - after I had time to process the fractured hip - which thank Gawd, does NOT require surgery - I thought about how scared he must be, realizing he came so close to being immobile. How terrifying for him, because he would surely know that's a quick downhill slide. Then I felt the typical cycle of guilt and then heart-stopping panic really thinking about my dad - whom I've taken care of almost six years now - dying. Then I felt terrible and so sad. There is no winning scenario for anyone in this. No one comes out unscathed. 
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Reply to tiredonlychild
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I don't know if anyone else feels this way. I went through my father's decline and death. Now I am going through the same with my mother. I don't know how much longer it will be. I'm 65 now, so I know I am also looking toward the end of life for myself. It's almost like I'm dying three times, going through this all alone. We are told that we only die once. Whoever wrote that -- the Bible, I think -- was not a family caregiver.
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Reply to JessieBelle
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I miss myself, it's all about her.
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Reply to Lovestinks
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JessieBelle It is from Hebrews 9:27. "And it is appointed unto men once to die, but after this the judgement."
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Reply to Patticake2
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The lack of reality in dealing with a narcissistic parent. To others, my father is a "great guy"
super friendly, always remembers care givers birthdays, their kids names ages etc. Always
solicitous. With me, it's 3 am phone calls with the latest crisis, usually something trivial, or
endless tasks when I visit, trips to the doctor, medical supply shop, sorting out all the messes
he creates. Transferring him in and out of the wheelchair, to the toilet, takes a huge toll on
my back (I've been in 3 car accidents). I spend my vacation time and money visiting him and
he tells everyone I'm relaxing on vacation, while in reality he's just barking orders at me while
playing super sweet to everyone else. He calls me daily to tell me about his latest crisis and
tell me about his bodily functions

People think I'm just a lazy greedy daughter, when in fact I'm a super thoughtful, conscientious
and very very very exhausted daughter. Frustrating beyond belief!! I feel he took advantage
of me while I was a child to caretake the crazy wife he no longer wanted, and now he's taken
advantage of me again as a middle aged woman to drain my life so he can be cared for like
an infant. Cue hair pulling frustration!
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Reply to bettina
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JessieBelle - I feel your answer. I think about dying and death constantly now - and even more painfully and with guilt, it's not even necessarily as a grief issue, but a "I will never be free of taking care of other people" duty issue. Went through my mother dying of breast cancer - blessedly short-lived, and now, going through the long decline of my father - he's come home too soon from his fractured hip, and can't walk. And today, for the first time, I got to dump and clean a bedpan filled with poop, a new low. (He complained that the tissue paper was single ply - no "thanks, I'm sorry, this is embarrassing." I just became instantly the chamber maid) I think about my own decline, my father's miserable road, my husband's possible decline (he's extremely overweight and in terrible health) and when I really want to torture myself, even the possible deaths of my children. It's been too much misery for too long, especially because I'm also the primary breadwinner. (And I'm not even in as deep as many of the people on this board) I just fantasize all the time about being free from everything - daughter, wife, mother. And to be honest, short of mothering - which I generally feel a great and loving obligation to - I really am so over the wife and daughter part. I could live so well on my own, and to be honest, I feel like the men in my life are taking huge chunks of my well-being down with them with their bad choices and horrible attitudes. I seriously might move out into another home when and if my father passes, and try a year alone -- I don't necessarily want a divorce, but I do want a solid, serious period of time where I get to take care of just me, myself and I. How wonderful would that be? (And hell, it's what everyone else does around me.) I am also angry that I'm eating antidepressants and xanax and go to counseling to get through my life, but of course, the men don't do ANYTHING to get in a better place. And I KNOW that if I were alone, I wouldn't need any of this medication, because I have the good fortune of a cabin that was willed to me from a friend, and when I'm up there ALONE, I'm just fine. In this case, it is straight-up environment issue, not a biology issue. So yes, I feel I have already died on some days, and actually, because I'm a planner, I kind of feel that mine could be the least traumatic. How odd is that? Hugs to you. At least today, we're alive, so we need to try and live like we're halfway alive, not halfway dead. :)
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Reply to tiredonlychild
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I am hanging on by a thread. It gets thinner every day. Eight years I joyfully moved to the town where my 1st grandchild would soon be born. 18 months later came number two. I have fought off melanoma, received a diagnosis my husband of 45 years has demention, lost my mom to cancer and soon after my dad. I repeatedly found strength in being with my grand babies. Today I learned they would soon be moving to the west coast. As I said the thread grows thinner. This is a tuff one.
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Reply to oleput
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1.The lack of appreciation for those you are taking care of!

2. The loss of the person I once knew...I am grieving the loss of that person before they pass on.!
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Reply to KellyJ17
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Right now...its how I feel like my mom is hurting my marriage, and making me feel drained and she's clueless to it.
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Reply to stressed2017
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Stressed out can you get away , you and your husband for a few days? We just did. It helps so much. Of course , my daughter spotted me one night, my uncle the next. But it does help
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Reply to Erinm60
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I'm an only child. I deal with a lot of anger. My mom refused to go to a doctor for 15 years because she knew she needed 2 knee replacements and feared it. She is now 75, and literally walks an inch at a time. She is a hoarder, big time. She was living in horrible conditions and kept falling. She had no room to use her walker. I managed to move her to an independent living center with assistance available. But she has steadily gotten worst. She will soon be in a nursing home. She wants everyone to cater to her. But she still refuses surgery. She let herself get into this condition long ago, but now blames everyone, well mostly me, for her being in pain and getting no relief. She pees on herself because going to the bathroom is a hassle. Then she leaves the soaked pee filled poise pads all over the bathroom. She cannot even drop them into a waste basket. Why does she live that way? She doesn't understand that I live an hour away and work a full time job. I have no vacation or sick time because I'm fairly new at this job. I changed jobs to have closer access to her if needed. But she yells that I don't have time for her. Ugh! I need a support group.
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Reply to lilcajunlu
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I have been taking care of my mother since 1996. If I ever get out of here alive, it will mean a complete rebuilding of my life.
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Reply to johnk6749
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johnk - I can't comprehend how long you've been in this. I'm so sorry. I've only been taking care of my dad for five years, and I often think, who's it going to be? Me or my dad first? this past weekend slayed me. for the first time, I really went through the day 10 minutes at a time...I can't IMAGINE 21 years. Just. Can't. Hope you get help and support. Glad you're here.
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Reply to tiredonlychild
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John my mom has been with me since 1994. She was fine then. Late 50's. Has your mother been ill that long? My mom , last couple years.
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Reply to Erinm60
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